Can you imagine living the majority of your life trapped in your own disabled body only to be freed because of a misdiagnosis? That was me. That was my life.
Quite often I’m asked questions like, “Aren’t you angry that you missed out on so much in life?” or “How do you stay so positive?” and “would you have needed all those surgeries if you had received a diagnosis of Dopa Responsive Dystonia (DRD) as a young child?” These are all great questions, but I can’t believe that no reporter, individual listening to me speak or friends have ever asked, “How did this affect your brothers?” Honestly, I don’t know for certain how they felt about all of this, but I do know that it affected them immensely growing up.
My limited mobility had a huge influence on what we did together as a family. When we visited National Parks, we never went on a hike, much less a long walk to get the perfect family photo. When we visited water parks, my teenage brothers would go off on their own so my parents could take me for a quick round of mini golf, ice cream and a few souvenir shops. And when we had no choice but to get to a destination by feet, my brothers would take turns giving me a piggy back ride. This was just a part of our normal lives. At the time, I never gave it a thought. But as an adult looking back, I realize all the sacrifices they made simply because their little sister had a knee-knock walk which made it impossible to participate in any activity that most kids loved and looked forward to.
Truth be told, they got the short end of the stick the day I was born. Yes, I may be the one who had to physically deal with spastic arms and legs day in and day out, but so did they! Why is it that no one ever thinks about that? Or is it just me? Why didn’t I ever think about how it affected my brothers? I guess I was just doing the best I could to get through life.
So to my brothers, I have to say Thank You! I thank you for your unconditional love. I thank you for never showing me how frustrated you must have been for all the times I held our family back. But most of all, I thank you for treating me like a normal sister! I am blessed to have you both in my life!
As many of you know, I live in the great state of Minnesota! Or as my mother-in-law says, "Minne-SNOW-ta."
The day began with rain and we all knew that it would be turning into snow by 2pm. As I ran my errands, I heard so much grumbling. Ugh...Snow or I'm not ready for this! And the most common, the traffic is going to be horrible!
I get it, snow can cause many inconveniences: delay in travel, more work (shovel/plowing the driveway), and slippery sidewalks, but you don't have to join in the negativity. You have a choice! You can look out the window and curse mother nature OR you can embrace it!
If you stop and look at the "white stuff" and I mean really STOP and look at it, I'm sure you will see so much beauty. As it slowly begins to stick to the trees, it changes everything. It's a new beginning. Are you willing to make this the year that you don't complain about the weather? Is this the year that you don't join in on the negativity? Or is this the year you finally book that trip to Mexico? Do whatever you've got to do to stay positive this winter! The choice is yours!!!
There is so much I want to tell you, yet I know that you won’t believe the half of it. I know that this has been a difficult year for you as you deal with your sick Grandma, the stress of college and trying to maintain your mobility. I just want you to know, that no matter how hard life gets, it WILL get better. You are going to be amazed by how wonderful your life turns out. Don’t ever lose your positive attitude and don’t ever give up HOPE!
The next time your mom tells you that you will get married and have a family of your own, don’t roll your eyes at her! She’s right when she says, “You’ll end up with the nicest one of all.” Despite all the physical challenges you deal with everyday due to your Spastic Diplegia, there is a wonderful man you will meet in college who will not only become your best friend, but he will choose you to spend the rest of his life with. He doesn’t care that he has to help you walk. He doesn’t care that he has to help you shower, brush your hair or even assist you to the bathroom. He loves you because you are positive, happy and don’t ever focus on your inabilities.
So, I know you always thought you’d never have children, but would just be the “fun” aunt. I gladly want to tell you that is wrong! In fact, you’re going to have three happy, healthy children. The first two pregnancies are going to be very challenging, both mentally and physically because of the spasticity you deal on a daily basis, but the third pregnancy will be a breeze, which brings me to the most exciting part of this letter. You’d better brace yourself. Are you sitting down? Of course you are.
Here’s the BIG news:
When you are 33 years old, you are going to be told that you have been misdiagnosed, be given new medication and will be on your way to living an independent life. I don’t expect you to believe this, because some days I still don’t believe it myself. So on those days where you feel like it’s just too hard and that family and friends may be better off to have you stay behind, remember this: Don’t ever give up, because miracles do happen. I know this because I’m 40 years old and I’m not in a wheelchair. I’m not in a nursing home, I’m not alone. Instead, I’ve got a family of my own and I can take care of them. I know that you’re having to deal with a lot to get to where you are today, but it’s so worth it!
You wanna know the best part? You’re going to start blogging, you’ll publish a memoir called Misdiagnosed, My Thirty-Year Struggle with a Debilitating Disorder I Never Had, and in doing so you will help 20+ people from around the world get a correct diagnosis, just like you.
So, Jean, I want to tell you to hang in there. Life will not only get better, it’s going to become amazing. Stay strong and NEVER give up!
Jean (the 40 year old you)
I spent my entire life trapped in my own disabled body (thinking I had Spastic Diplegia), unable to do simple everyday tasks that others took for granted, only to find out that I had been misdiagnosed. At the age of 33, I was given a whole new life! As a result of my new treatment for Dopa Responsive Dystonia (DRD), everyday I was doing something new and exciting. Not adventures thriliing to most, but certainly to me. I had never put a frozen pizza into the oven, driven my kids to their activities and hadn’t showered independently in years! Yet, these were my adventrues on my new medication of L-Dopa! And all I could think was, if I went misdiagnosed all these years, then surely there are others out there trapped in their spastic body just like I was. I knew that I had to put myself our there in hopes of “rescuing” others.
Yes, I blog about myself. Yes, I share the excitement about completing simple tasks, that most tweens have already mastered. Yes, I talk about my struggles and that this new diagnosis is “not a cure.” And Yes, there are people out there who think that I am only sharing my journey in hopes of being in the public eye. To get another story, simply for the attention or money. I must tell you, I’m not paid for the interviews I give, but yes I want my story picked up in the media. It’s not because I want the attention. It’s because every time my story makes it into a magazine, news paper or news show, I’ get an e-mail from one of their viewers…
“I am 42 years old and was just diagnosed with Dopa Responsive Dystonia due to your article in The Mighty.”
“At age 37 I have just been started on Sinemet. Your story got me looking into the possibility of no longer fighting to walk. I was first diagnosed with CP around age 12. I am happy to report it feels like a band that has been tied around my legs has been cut.”
“Jean! I am weeping tears of joy right now! My cousin was just here….in person….which is saying something as she was nearly completely immobile and left home only when necessary. Our family has had a MIRACLE! “
“We are grateful to you because without your story, my wife would never know the improvement she has so far achieved. “
“One of my doctors was watching cbs when your story aired. She immediately called me saying she thought I was misdiagnosed. I started the medication 3.5 weeks ago & it has helped me greatly.”
“I walked in front of my mom and older brother this weekend. My mom was so excited she videotaped it.”
“I read your article and I felt as it I was reading about my self…. I have been on it (Sinemet) almost six months now and it is amazing, confusing and emotional. I can walk almost without a limp, I am not tired all the time and my balance is improving. I am going to physical therapy monthly and can’t believe the change (either can my neurologist and P.T.)”
And sometimes, my blogging doesn’t assist in a correct diagnosis, but it offers HOPE to those who no longer have any…
“My daughter’s biggest fear when she was in that wheelchair was— how could she ever get married? She sobbed crying asking how will I get down the aisle? Will one of my bridesmaids have to push me? Who would want to marry me if I am in a wheelchair? These are such hard questions to have to answer to your own child. Your blog gives people hope when Doctors don’t! Thanks so much for spreading the word on Levodopa and reminding us all to count our blessings. Today you are one of mine.”
These are just a few of the reasons why I put myself out there. I find it stressful to be in the media at times, and that plays havoc on my DRD symptoms, but in doing so I have helped 20+ people receive in receiving a correct diagnosis of DRD. When I open up my e-mail and see that someone is walking for the first time, it makes all the added symptoms worth it and I can’t help cry tears of joy. Yes, I understand that some may see my blogging as selfish, but please understand I only do it to help give others the freedom that I now have. And to me that is an amazing gift!
To read more about my journey check out Misdiagnosed...My Thirty Year Struggle with a Debilitating Disorder I Never Had
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Wow! How can it be six years already?
So much has changed these past few years. I love that I only need to take 3 pills a day, compared to the 15! I love that I've been able to share my story with the world and help others receive a correct diagnosis, like me. And I LOVE that Steve and I were able to have a third child, our beautiful John. So much has changed, yet, the love and support from my family continues to grow. I feel so much warmth in my heart as I reflect on this on such a holy weekend.
Good Friday and Easter Sunday will never be the same for me again. I never believed that a new medication would be the answer to my prayers. And I certainly never believed that I would be able to live a life of independence. How lucky am I?! I've had numerous people who have read my memoir reach out to me and say, "I will never look at Easter the same again."
On this six year anniversary or should I say birthday, I will continue to give thanks for all that God has given me as well as how much Jesus sacrificed for me...for us. May you feel a closeness to the Lord on this very special weekend. Happy Easter!
I haven't blogged in over two months, simply because I've been listening to my body, which was yelling at me to "SLOW DOWN!"
In order to keep my symptoms at bay, I have to get plenty of rest, stay free of illness and keep my stress to a minimum. Well, I was doing fine with staying healthy and getting plenty of rest, but the stress factor was another story. I was stressed about the release of my memoir, my mom was diagnosed with breast cancer (she's going to be fine) and my husband was part of a big lay off at work.
I had far too much on my mind causing severe pain in my muscles (particularly my left shoulder). Having Steve and the girls rub my back, along with using my Thera Cane and stretching was not helping. I've got a really high pain tolerance, but eventually I couldn't take it any longer and had to go to Urgent Care. Ugh, I was NOT happy about that, especially when they decided to run an EKG! Of course all was well, because it was indeed my DRD symptoms telling me to slow down!! So, I temporarily stopped blogging, took more time out of the day to rest, as well as stretch those cranky muscles.
Often times, things happen that we cannot control, but how we choose to deal with them is entirely our own decision. And we have to listen to our bodies!! I'm pleased to say that the knots in my back are gone, Steve is expected to receive a job offer in the near future and my mom is nearly done with Chemo!
As always, thank you for all your support and love!
As you can all imagine, I am incredibly busy with my memoir, but I have to give a heartfelt thank you to everyone who juggled their schedules around so they could be a part of my book launch party in Andover, MN. To say the evening was a whirlwind for me would be an understatement! What a blessing to have a constant line of family and friends waiting to peek at the book that I have been working on for the past five years. What a wonderful surprise to see the physical therapist who taught me how to roller skate, the English teacher who always had a gentle smile and classmate who helped dress me when my arms failed me one day after junior high swimming lessons.
Later, when Steve and I were able to reflect on the evening, I kept saying, "I can't believe all those people came. It's December. The busiest month of the year!" To which he replied, "This was more than a party to celebrate your book, Jean, it was a celebration of your mobility, something no one ever expected."
He was right. It had been over five years since my correct diagnosis, but we'd never formally celebrated it with friends and family. We never took the time as a group to reflect on how far I have come since taking that first miracle pill. So, for everyone who came last night to celebrate with me, I thank you for all your love, support, strength and encouragement you gave me then, and that you still give me today.
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More pictures to come tomorrow on my Facebook page!
If your child took antibiotics for an ear infection and it cleared, would you think they had made up that their ear hurt days earlier? If a friend began taking new medication for migraines, would you question that their migraines were never an issue in the first place? My guess is, no. So, why would someone question an individual who once had limited mobility due to spasticity, who began taking L-dopa and can now walk? This may not have happened to me, but it may as well have. It has triggered a frustration deep inside me that I can’t explain.
Since my story went viral last spring I have received many, many inquires about Dopa Responsive Dystonia (DRD). In fact, nearly two dozen began taking L-Dopa and are seeing significant results! Amazing, right? Even though they are progressing on the new medication, they often ask me questions about my experiences such as how they can gain strength and how to overcame the internal thoughts of can I actually do this?
The other day I received an e-mail from one woman explaining that some people, including her doctor, don’t believe that the medication has been helping her as much as it has. Her physician asked her if she wanted to see if she could go with out her l-dopa for awhile “to see what happens.” To say I was floored would be an understatement. I could feel my blood begin to boil, but then she went on tell me more...Her roommate actually hid her new medication for 24 hours, because he thinks she’s making this all up! In the meantime, she was in lots of pain from muscle spasms and became more immobile.
I had to take a couple deep breaths, because I can’t help but wonder who are these jokers? And, I’m sure glad none of my friends acted like this! Like me, this woman went three decades dealing with mobility issues and had to use a cane and mobility scooter. So I don’t know about you, but I highly doubt that last month she decided to quit the charade and start walking independently.
As I write this, I can feel the stress build in my chest for the woman who is going through this. I want to say Go find a new doctor and make new friends! Luckily, she is getting a new roommate! Thank Goodness!
I felt like I had to share this for a couple reasons. One: to encourage people not to judge others for what they are going through. If you think that this is “all in their head” please do your homework to understand the situation better, and keep the thought to yourself because the journey is hard enough without comments from doubters. And two: to tell my friends thank you for being so understanding during all of my medical adventures! You are the BEST!!!
A special than you to Tom Seaman for going guest blogging again! I have been so busy trying to get my memoir out there, that I haven't blogged in two months!!! That is going to change. I promise that I will have one of my own entries up by the end of the week! I have lots to share with you all!! In the meantime, please read Tom's blog entry below.
From severe chronic pain and morbid obesity to a joyful bike rider!
When you look at this picture, you see a regular guy riding a bicycle; and that would be correct. I am just a regular guy doing a regular, everyday activity. However, this wasn’t always the case. What you don’t see in this picture is a former morbidly obese, depressed, angry guy in severe, chronic pain.
When dystonia entered my life, everything stopped, or seemed to stop, as everything I did was no longer possible for me to continue. Work couldn’t be done. My masters degree that I was pursuing at the time quickly became a lost dream, I couldn’t travel…heck, I could barely sit or stand without crying pain.
Because of my sedentary lifestyle with disabling pain, a terrible diet, and medicating myself with alcohol, I gained a lot of weight. I was well over 300 pounds, a long way from the 190 pounds I weighed when dystonia began. I was a recluse, holing myself up in my house for years, embarrassed and ashamed at what my life had become.
Five years after my diagnosis, I reached a point where I was afraid I might die from the punitive lifestyle I chose for myself; all done for the purpose of avoiding my physical and emotional pain, but my escape actually made me worse so it was a fruitless endeavor. A decision had to be made; continue this destructive lifestyle and suffer the consequences, or make a change a get busy living. I chose to live. I wanted a different life and would do anything to make it happen. Each day I took baby steps by exercising and changing my diet. Each day I added more things to lose weight and also gain greater control of my dystonia symptoms.
Unfortunately, I developed some problems in my back that made walking uncomfortable (my main form of exercise), so I took to riding a bike to get around the neighborhood. I felt like a kid again so I began to ride further. Wow it felt good! While I don’t go very far, maybe a few miles, I do enough to get my heart rate up and break a sweat. Some days I will really push it and get in a good workout, while other days I will roll around and just enjoy the scenery, something I missed out on for way too many years.
To everyone who sees me riding a bike that doesn’t know my story of pain, obesity, and on the verge of suicide, I am just another person out getting some exercise. This is true, but what they don’t know is that this is a guy who almost wasn’t even here at all. Most importantly, they don’t see the immense internal joy I now feel just to be able to sit on the bike again, let alone ride it!
So grateful to be alive, I love riding around and seeing a fox run by or a rabbit staring at me from the bushes thinking it is camouflaged and I can’t see it. I love seeing the colors of the sky change in the evening as I ride. I love feeling the wind on my face, the way the bike banks on turns, and how my heart feels beating through my chest; things I never thought I would experience again after my diagnosis…ever!!
To anyone looking at this picture it appears that I am just a guy out enjoying a bike ride…and you are absolutely correct. For the first time in years, without worry or fear, I am finally just a guy out enjoying the ride…the ride of his life!
Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1.
I love meeting new people and it's also really fun when we have that connection of misdiagnosis and discovering a whole new life to do one tiny pill. Meet Kathy Baquie, one of those new friends. She also happens to be my latest guest blogger. Thanks for opening up and sharing your experiences with us!
Where does my story start?? I guess before I was born. Something happened in the development of me before I was born. Hence I was born with Dopa Responsive Dystonia. Except in 1959 no knew what that was. I grew as much as I could being a normal kid. I fell over an awful lot, told I was just clumsy. Went to sleep very early as I was tired out. I didnt do very well in school, my handwriting was terrible as my hand shook and my fine motor skills were not what they should be. As I went into teenage years and because of my family situation I was told all my syntoms were put on for attention because they werent always visible. My mum did try to get some help for me but no knew what was wrong. I made up excuses for why I had trouble walking around. I would make up lies to stay home from school so I could sleep all day. I had some physio treatments but to no avail. At 18 I had had enough of being told that there was nothing wrong with me and it was all in my head. I got a referral from my local doctor and went through a whole lot of tests. I finally got a diagnosis of Familial Spastic Paraparesis. I felt so euphoric!!! At last someone believed me. Still there was those in my close family that didnt believe that there was anything wrong with me and it definitely didnt come from their side of the family. Anyway I went on to do some travelling overseas, kept working in a full time job and eventually got married. I two of the best daughters ever. But by the time I had reach around 30 I was having a great deal of trouble keeping up with life. I arranged meeting with my then Neuro Specialist. His diagnosis and prediction for my future was to sell my beautiful home in the Hills, no more children, no stress and wait to end up with a walking frame by 45 and wheelchair by 50. I cried for a solid 2 hours. I changed to my father's Neuro Specialist, ( I was so pleased my father was now on my side) who put me on some new medication that helped a great deal but not as good as my current medication. I have stayed with this specialist for 26 years. After being with Professor King for about 9 years he suggested I particpate in a medical trial about rare neurological disorders. It was because of this trial that I finally got the correct diagnosis of Dopa Responsive Dystonia, along with the correct medication. Within a week or so all my syntoms had disappeared and the chains I felt had restricted my body for nearly 40 years were gone. I had never felt more alive. Within a few months I had gone from barely being able to walk to walking about 6 – 7 kilometres a day and the best thrill of all was skiing down the slopes of Mt Buller (snow fields in Victoria Australia). I have continued to take what I now call my happy pills on a regular basis. I just been through Menapause which has played up with my DRD. I dont sleep well with menapause which makes it hard to cope with my DRD. I do the best I can. I hope my story helps others.
Melbourne Victoria Australia.
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!